can anone enlighten me please on what is ghoing on with me
MINKA
Member Posts: 35
l aways had a bit of a clunk when doing quad exersises to get more power and stability in me knees.
came out of swimming pool 3 months ago and the left knee was sore like i could pull it out of the quad from under the knee cap
rested it and iced the swelling
then the other knee started swelling a BIT like bad bursitus of the knee.
kept trying to walk but stung like hell even after resting.
2 weeks later whent to hospital mri showed up normal on the worst one cos i was compensating.
had a bit of disk bulg they said also at l4l5 wich has been their since 1991 but never caused me a problem they even said this is not a problem only slightly to left disc bulge.
then i was sweating at nights bad and kneck started cracking a bit.
then it was like all things with a joint got water in them
3 months later and me hands at nuckles whent red sores under skin like rumatoid.
can rumatoid come on as fast as this or have i got my imune system going mad
i dont know whats going on but im either dry joints or wet joints and tired at night
cant walk verry far now as the worst knee the left on ankles started to give a bit like the ligament are inflamed
regards to anyone who has this await a reply
doc not verry good never heard on all my blood test done about seronegative but then in dont know what it is
many thanks john
came out of swimming pool 3 months ago and the left knee was sore like i could pull it out of the quad from under the knee cap
rested it and iced the swelling
then the other knee started swelling a BIT like bad bursitus of the knee.
kept trying to walk but stung like hell even after resting.
2 weeks later whent to hospital mri showed up normal on the worst one cos i was compensating.
had a bit of disk bulg they said also at l4l5 wich has been their since 1991 but never caused me a problem they even said this is not a problem only slightly to left disc bulge.
then i was sweating at nights bad and kneck started cracking a bit.
then it was like all things with a joint got water in them
3 months later and me hands at nuckles whent red sores under skin like rumatoid.
can rumatoid come on as fast as this or have i got my imune system going mad
i dont know whats going on but im either dry joints or wet joints and tired at night
cant walk verry far now as the worst knee the left on ankles started to give a bit like the ligament are inflamed
regards to anyone who has this await a reply
doc not verry good never heard on all my blood test done about seronegative but then in dont know what it is
many thanks john
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Comments
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Hello Minka, it's nice to meet you and I'm pleased you have found us. We are not doctors so we cannot tell you what is happening but it does sound like a case of an arthritis, possibly an auto-immune type such as RA and yes, that can be very aggressive. Do you have a history of auto-immune health issues with yourself - asthma or eczema for example? Does any one else in your family have RA or another form of arthritis? There is a genetic component to this but it can also start just because it wants to. I have psoriatic arthritis and the joint damage from that has led to OA in my knees and ankles. My PsA took a very long time to be diagnosed because my rheumatoid factor was nil but my inflammatory markers were always high, so for years I was tagged as an 'auto-immune arthritis' patient. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hello John and welcome to the forum,
It sounds like you are having a bit of a rubbish time. Arthritis can do many things and behave in many ways. It can also take many years for a diagnosis - my arthritis isn't rheumatoid but is a seronegative arthritis which means it inflames, is caused by my immune system but is not rheumatoid because I test negative for the rheumatoid factor in my blood. Did you say that your tests have come back as seronegative?
I think maybe what you need to do is go back to your doctor for some clarification. You sound to have gone from active and athletic - swimming and quad exercises to struggling. On that basis, it may be worth asking for a referral to see a rheumatologist at the hospital. X-rays and blood tests don't always show things and as I say, it can take time to find out what is going on.
I hope that helps. I'm glad you have found us, we are a supportive group who will talk to you, lend you support and try and answer your questions. If you want more specialist advice then call the helpline (number is at the top of the page) they are really lovely and may be able to explain things to you and suggest what you can do next.
LV xxHey little fighter, things will get brighter0 -
Hi John, sorry to hear your troubles. You sound as if you have something going on that needs treatment.
Have you thought about changing your doctor? It's not hard and can be very beneficial. Ask around and see if your friends/neighbours can recommend a different one.
If not is there a different doc you could see at your surgery? sometimes a different doc gives you a different response.
At the very least you need blood tests and x rays to confirm what it is you have. Sometimes it takes a while to get a solid diagnosis but you must keep at it. After all it's your body and no one will knock on your door and offer you any help, we have to do it ourselves I'm afraid.
Please think positive and get some help, once you are diagnosed you will find that you will slot in and begin to receive help and advice.
Very best wishes to you, Joy0 -
Hello John and welcome from me too. You have some good advice there from the others so I won't bother repeating it all except to emphasise that, if you do have some auto-immune form of arthritis - including the sero-negative ones - then you need to ask your GP for a referral to a rheumatologist. Only rheumatologists can prescribe the meds that we auto-immune types need. Good luck!If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi John
And a warm welcome from me, I went to the gym for many years, but Im afraid to say it didn't help my joints, especially the knees, and my hips...I remember hearing and feeling a strange noise when doing legs lifts and side kicks, the good news is my consultant say my muscles are in really good order for my ops.... :shock:
Like the others have said ask to be referred to a rheumatologists then they can do all the blood test and ask all the right questions.
I do wish you well with it all,Love
Barbara0 -
thanks everyone for the warm welcome to the site
this is what they checked everything normal
they said
B12
CK
CRP
EPS
ESR
FBC
LFT
UE
SAN ANTI NEUTROPHIL
SRA CYTOPLASMIC ANTIBODIES RHEUMATOID FACTOR
walked with me stick round leigh yesterday shopping boy after that my knee was having a bad time on the left leg and ankle and the other was a bit sore cos i seem to compensate for it got home at night time arms aching legs aching neck aching o my i thought what started out with just a bad left knee with water in it has realy spred out a bit to every bone joint i have
somtimes my arms shake a bit cos i tend to try and over come things then when i sit down they shake with the trying to over come obsticals in what i want to do wife thinks its angsiety.
could be i dont know any more.
so today im going to rest a bit and veg.
thoughtn i would get up this morning and everything would be realy bad but it was not as bad as i expected
just the old knees and ankles and neck.
dont know why i get ringing in my left ear thats one i dont understand
like i said before got checked out for ms by one guy i paid he didnt think i had got that. but you shouldnt look to much on the internet or you will think you got all sorts.
ive kept me swimming up and the only thing that has happened in 7 years is a bit of discomfort in the knee in winter or nealking on them then it just goes.
but now its purmanant feels like dead prunes under me knee caps with the pattelas not tracking right.
then you get wrists hurting its all above me in so many places.
i think me doc thinks im a hypocondriac.
i was a nuclear engineer so i know when somthing is not right and i can usualy find the answere engineering wise but this in so many places beats me.
last time 7 years ago knees wattery and sore then whent and left me with a clunking knees not a problem after that then kicks in again and i think to myself 6 months and back to same condition but not making eny headway trying maybe the answer is rest a bit more read a book
many thanks again0 -
oh forgot to say knee specalist sent mri off to rumi who said slight bulge disk l4/l5 which i have had since 1991 and never gave me a problem now he says its degenrative dis desseas in spine HOPE HOSPITAL DIDNT SAY THAT THEY JUST SAID CONSERVATIVE TREATMENT NO INTERVENTION REQUIRED.
now rum man says patela tendonitus
where he get that from knee specialist says minimum cartlidge ware no different to 2005 time it was done and i pulled it back.0 -
If patella tendonitis is anything like hip tendonitis, you have my sympathy, John.
I do wish we could help you out with a diagnosis and prescription but unfortunately it doesn't work like that.
If you have disc problems that could impact on other joints below them and the shaking could simply be a result of all the extra effort and resulting muscle tension but, really, you need to go back to the doc if you're not happy with things. And, if you're not happy with the doc, try another one. Many do.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Fbc
Total white cell count 11.7 10*9 (4.0 – 11.0) HIGH
Netrophil count 8.55 10*9/L (1.7 –7.5) HIGH
Monocyte count 0.9 10.*9/l (0.2 – 0.8 ) HIGH
Protein electrophoresis
Serum total protein 73 g/l (64 –83)
Serum albumin 50 g/l (35 – 52)
Serum globulin 23 g/l (20 – 37
Report will be filed as 44N.. serum protein electrophoresis (potentially abnormal)
Erythrocyte sedement rate 13 mm/h (0 – 7) HIGH
Reumatoid factor < 20.0 iu/Ml (0.0 – 20.0)
WILL BE FILED AS 20.0 iu/Ml
got me blood test back and these are the worst of the bunch not gratley high but have a look
one of the rumi said i have bipartite patella so WHY DID THE KNEE SPECIALIST SAY ONLY MEDIAL KNEE WEAR ON CARTLIDGE THEN AND NOT THIS OF THE MRI SCAN whose right i would like to know.
Serum cretin Kinas level 88 U/L (39 – 308 )
Serum c reactive protein level NOT DETECTED
CANCA P-ANCA will be filed as 43b8 .00 ANCA PATTERN
NEGATIVE
P-ANCA
NECATIV
Serum vitamin B12 315nl /L (191 – 663)
Serum FOLATE 14 UG/l ) (3.1 – 17.5)
I have more info but looks to me that the ( ) fig is the range it should be in the fbc i have put whats reading high any help appretiated for tomorrow0 -
I'm sorry, I can't interpret these and I'm not sure that we should try. We're not qualified to say what's what.
I don't know who you will see tomorrow (rheumatologist or GP?) but they really are the people to put your questions to. I suggest you make a list so that you don't forget anything and take someone with you to help remember the answers. I hope you get answers that will help.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi John
I hope that whoever you are seeing tomorrow with be able to interpret the results for you.
However if you can see yourself that some of the results read 'high' you shoudl push that point. You should also iff you can take someone else with you to thsi appointment so that they can a) support you and say what they see
and b) remember what you don't remember - its so easy to forget stuff when you are there.
If there are other symptoms present don't forget to mention these too such as a high temperature etc make sure they understand how you have been affected - eg. what you can't do now
Hope you get some answers and a plan of action
Lots of luck
Toni xx0 -
i wish i could put on there the sketch he did for me.
HE listened to all what i had to say and i was verry calm for onece the wife said
i asked if i sounded to much like i was a hypo condriac HE SAID NO.
HE SAID THANKS FOR BRINGING YOUR BLOOD ALONG AND THAT YOU GOT CHECKED OUT WITH A NEURO FOR MS.
can i look at your hands.
bet you have also had pains on the top of your spine near your bum havent you i said how you know that he said cos you SI joint will be inflamed also. (how the hell did he know that I DIDNT MENTION IT)
he THEN STARTED SKETCHING THINGS ON A PAPER IN THE 3 CIRCLES HE DREW rumi then lupus diseses and spondyloarthpathy enthsihs.
RIGHT JOHN I KNOW YOUR GRAN HAD YOU SAY RUMI WELL IF YOU HAD THAT YOU WOULD NOT HAVE SWELLING IN THAT AREA OF YOUR FINGER OR THAT NODUAL IT WOULD BE SYMETRICAL AND RETAIN ITSELF TO THAT AREAS SYMETRICALY.
NOW LETS LOOK AT LUPUS WELL IM SURE YOU DONT HAVE THAT
SO THEN WE HAVE ONE CIRCLE LEFT SPONDYLOARTHPATHY.
now you have had this for the 3 rd time first two time how long to clear it well i said took 9 months to start feeling something like and the second time well a bit more.
so he then drew 3 graphs one age rang 20 to 100 years old
HE SAID FIRST TIME YOU GO UP ON THE GRAPH THE IMMUNE SYSTEM STARTS TO SORT ITSELF AND YOU COME DOWN 2ND TIME YOU GO UP ON THE GRAPH HIT THE TOP START TO COME DOWN USUALLY THIS IS A BIT LONGER but maybe you where used to what was happening a bit.
AS YOU GET OLDER THE STEEP GRAPH GETS LARGER USUALLY TAKES MAYBE 1 1/2 YEARS AS WE GET OLDER.
NOW IF YOU HAD NOT COME HERE TODAY IN IM NOT SAYING THIS WOULD HAVE HAPPENED I DONT KNOW BUT IT MAY HAVE TOOK YOU 2 YEARS TO FEEL A BIT BETTER COMMING DOWN ON THE GRAPH.
Somthing in your system started this like stomac or somthing else and your imune system response was to kill the invader. unfortunatly your system sometimes carries on killing it dosnt attack the joints thats why mri and xray showed same joint thicknes of cartlidge.
what it does do is attacks the ligament areas of those joints which in turn can affect the carlidges cos they are not opperating right at the ligaments area.
The main pain was infront of the knee cap more so than under at first i said yes thats because of the fluid build up you where having that pain.
RIGHT GIVE ME YOU HAND presses on nuckle count 1234 white gone back to red normal blood flow.
PRESSES on 1st joint on little finger which contains more ligaments to bend 1 wowe back to red again see thats inflamation in that erea.
so john we have 2 options here to take
WE CAN ADMINISTER A GENOLOUGE INJECTION TO TRY OTHERWISE WE GO TO THESE I THINK HE SAID SULPUR LIKE TABLET.
I SAID WHAT WOULD YOU DO HE SAID I WOULD GO FOR THE INJECTION IN YOUR BUM FIRST AND LETS SEE WHAT HAPPENS.
THEN I WILL WRITE TO YOU AND YOUR DOCTOR and i also whant you to email me direct on what happens in the next weeks or so the web address of me at hospital will be on the letter. YOU WILL FEEL HOT FOR THE NEXT 3 DAYS OR SO.
jAB IN BUM. FELT LIKE I HAD A BOIL ON IT GOING HOME IN THE CAR.
so its watch this space in the next couple of days cos i feel a bit wierd this morning.
SO HOW COME THE RUMI AT HOSPITAL DIDNT EXPLAIN THIS TO ME AND WHO IS RIGHT WE WILL HAVE TO SEE.
hope i wrote this in a way that you all understand.
what are your views?
think this cost me with injection about 270 quid0 -
Right, so it sounds as though you've had a kenalog jab (steroid into the backside) and yes, that can make you feel hot for a while so I hope that passes and that the steroid helps. If it does it won't last for ever, steroid treatment offers only a short-term relief, it is not a solution.
As for the sulphur sounding thing, well my best guess is sulphasalzine. That was the first med I was prescribed once people had decided that I had some form of inflammatory artthritis. I've been on it since 2002, it doesn't do much for my arthritis but it does help my skin to stay clear of psoriasis.
You sound as though you have some form of spondylarthropathy so I hope you can get return to the NHS soon as the meds we need are not cheap. I don't understand your blood test results or other results you've detailed as I am only arthritic, not a doc. I leave all of that stuff to my rheumatologist and GP 'cos actually I'm not that interested in the technical side - I have enough on my plate with trying to get on with life. Let us know how you get on with the steroid, yes? Oh, and my sacro-iliac joints hurt all the time, it's miserable. Take care, rest now so that the steroid can get to work. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
I think DD's got it spot on, MINKA. The only thing I would add is to emphasise that, no matter how good you may feel after the steroid jab, it's not a cure and the effects will wear off. However, it will be good to have some pain relief until the other med starts to work, won't it?If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0
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